New lesion, no symptoms, need steriods?

[ADavid]

My neuro's nurse called today, said my recent T-spine MRI shows 1 small, new, enhancing lesion. Dr. wants to start me on Solu-Medrol right away. But I'm experiencing no new symptoms, functionally I'm fine. I don't like the effects of Solu-Medrol.

Should a MS patient take Solu-Medrol (1000mg/daily x 5 days) if experiencing no symptoms, no functional decrease? I'm considering declining the steroids and seeing how I do. I haven't experienced any new symptoms in over a year. Dx RRMS in July 2012.

[MSer102]

I think the popular opinion among prudent doctors is that steroids should be reserved for treating symptoms that are having a significant impact on functioning.

You've already had high dose steroids so you know how bad the short term side effects are. The cumulative long term side effects include osteoporosis, bone death, diabetes, glaucoma and cataracts. The benefit from steroids has to outweigh the risks. If you aren't having any symptoms at all - let alone significant symptoms that are affecting your daily functioning - and only one small lesion on your MRI it sure doesn't sound like you come anywhere close to meeting the prudent criteria for steroids.

And since steroids don't have any effect on the long term outcome of MS I can't imagine what good your neurologist thinks would be accomplished by treating your MRI instead of you. I also have the feeling your neurologist isn't going to pay for surgery to remove your cataracts that were caused by unnecessary steroids or osteoporosis medicine or insulin, yada yada yada.

In this case I think you should RUN AWAY! You are right to be suspicious and there is good reason for you to decline the steroids. And in your situation I would start looking for a new neurologist who has more medical knowledge and better judgement. Sorry this has happened to you. But there are many of us who have had to change neurologists for similar reasons.

[KatieAgain]

No...I can't understand the reasoning behind this. I agree with MSer102.

[Alicious]

For the reasons listed above, I would say no as well, and consider getting a second professional opinion. I got a second opinion last week on my treatment, and have since switched doctors. It's amazing how even good doctors can have very different approaches to treating the disease.


--the mid 30s lady developing steroid induced cataracts

[rdmc]

I'm allergic to steroids, so I never take them, even when I'm feeling the effects of a flare. The flares pass eventually, and studies done have shown that taking steroids, or not taking steroids, has no effect on the progression of the disease. They just make us feel better, faster, when in a flare.

Following that logic, there would not be a reason to take them if the lesion isn't impacting your life.

If you want to see an interesting graphic...google "More Than Meets the Eye Multiple Sclerosis." The article includes 24 MRIs that a patient had done during the course of a year, and they're time lapsed together. His lesions came and went, grew large, then shrunk, and he reported no flares or exacerbation of symptoms during that year, even though on the MRI it looked as if he would have been noticing more symptoms.

[ADavid]

Thanks. I got a copy of the radiologist's report today and while it showed several lesions on my T and C spine MRI, some have decreased, one has gone away entirely (from comparing to last year's MRI) but one new one appeared on my T-spine MRI - wasn't there last year. But radiologist said contrast MRI showed no enhancement, so in his opinion there was no active demylinating lesion.

However, my Dr. wants to start me on Solu-Medrol tomorrow. His nurse said it's due to the new T-Spine lesion. I also have multiple brain plaques but none are active.

I have a call in to my Dr. I'll talk to him or my PA before agreeing to any Solu-Medrol. Maybe they saw something on the MRI's the radiologist didn't. I trust them, they are very aggressive with treatment (my 1st and only DMD is Tysabri) but I've learned enough now to feel confident to question some things. Especially another course of Solu-Medrol! That sucks.

I don't want it unless I have significant new impairment, which I don't. Just the same ol' numbness and tingling I've had since I was first diagnosed. I'm used to it. Hasn't gotten worse.

[Kimba22]

Hi ADavid,

As I read your post, I'm reminded of another poster whose doctors would NOT prescribe treatment for debilitating symptoms and active disease activity. Your doctors are the opposite extreme.

I'm still confused as to why you were offered IV steroids. A new (and inactive at that) spine lesion doesn't warrant their use ... especially if you aren't experiencing new or worsening symptoms. The only thing new lesions warrant is a discussion about the effectiveness of your DMD.

Here's a link that would support your decision to decline them: http://www.nationalmssociety.org/abo...ids/index.aspx

I trust them, they are very aggressive with treatment (my 1st and only DMD is Tysabri) but I've learned enough now to feel confident to question some things. Especially another course of Solu-Medrol!

Knowledge is power, and I'm glad to hear you now feel confident enough to question things. You are the one who will have to deal with both the short & long term consequences of treatment. Just because a dr. recommends one does not mean it's a wise choice.

Drs. take an oath not to cause harm, but that doesn't mean they don't. Prescribing 5 days of powerful high dose IV steroids to a patient that doesn't need them is bad medicine. "Patient beware" is the best advice I can offer to anyone. I'm a strong advocate of 2nd and 3rd opinions.

I may be reading between the lines here, but the most aggressive treatment is not necessarily the best in your situation. I hope you fully understand & accept the serious risks associated with taking Tysabri (Progressive Multifocal Luekoencephalopathy - PML). Your chances of developing PML increase over time, and you will be treating your disease for many years to come. Other, less risky, DMDs may serve you just as well right now. But I don't know how aggressive your disease course has been.

Best wishes,

[ADavid]

Thanks all for your wise counsel.

I told the home health nurse to hold off coming over with the Solu-Medrol until I've had a chance to talk to my Dr. or PA about whether I really need to go through another 5 day steroid infusion. I hope to talk to them today.

I saw my ophthalmologist yesterday for a follow-up appt. (I have uveitis) and she said I have a cataract in my left eye, which explains the recent vision decrease in that eye. I'm 45, Dr. said all the steroids I've taken over the years for uveitis and now, more recently, MS (diagnosed last year), likely caused this premature cataract.

So all the more reason to hold off on the Solu-Medrol.